Medications, what else can I try, and what "opiates" work well for you?
 

Ok so heres a list of medications I've tried.


Gabapentin/Neurontin ----Severe Fatigue even after 3-4weeks

Lyrica----- Extreme vomiting nausea constipation (tmi i know)

Cymbalta-----Extreme itchiness, major bright red rash (Anaphylaxis)

Amitriptyline---no effect on pain other than helping to STAY asleep (not fall asleep)

Nortriptyline-----same as amitriptyline

Tramadol---- only works when not have too big a prob with pain

Oxycodone----A bit better than the tramadol but ineffective when having major flare ups



I have a quick doc appt today @ 2:30pm I need to talk to the Dr about medications as I am in serious pain again this week....I'm struggling just to get by....

I am seriously getting fed up with all this crap......grr

I wish I could help but you've listed most of my medications. You've probably used this as well- I find that if an area is particularly painful I apply a lidocaine gel patches to the area and it gives some relief. What keeps me going is that warmer weather may be on the horizon. I hope that gives you a "wee bit" of encouragement.

Yup I forgot I use those too lol! But I'm out and cant afford more right now :(

Also, on another note I'm pretty sure it's CRPS and not just prolonged nerve damage. My arm has started to turn bright red off and on :( that is of course during massive flare ups....

New meds....
 

So he's upped my oxycodone, dose to 10mgs and wants me to try VALIUM? For a muscle relaxant. We'll see how it goes......

I hope this brings you relief! You deserve it.

Have you tried therapy? It's a big help for those of us who have had our lives suddenly changed by things such as chronic pain. Some ppl cope and handle stress better than others. A good therapist should help you out a lot because medication is only a small part of the process.

There are many different pain meds, and you have to work with your doc to figure out the best combo for YOU. It can take years to figure it out.

Generally the best idea is to start with a low dose Extended Release opiate. Dosages and amounts are steadily increased until you get to a level where you're at your highest level of function--where the side effects of the meds such as drowsiness don't make you sleep too much for example.

Then, an Immediate Release opiate can be added in to help with pain spikes.

You must work with a doc that is experienced with RSD and or severe pain patients. To do otherwise could be dangerous. It's a good idea to find a pharmacist that will pay attention to your RXs, and will refuse to fill if they're written wrong or if it would be dangerous to take as prescribed. Docs are human and make mistakes!

I am seeing a Psychologist, who does bio-feedback and Hypnotherapy. It does help a LOT. It's just for some reason the last few weeks my arm has been getting worse. Believe me I didn't WANT to be on opiates for a long length of time, I have issues with constipation. But I'm kind of afraid it's progressing. Even with the therapy, physical therapy, and other medications that we have tried. Unfortunately I'm pretty much down to opiates for the pain relief because of all my reactions to the other meds...... it was a last ditch resort. But, I seriously couldn't handle the level of pain it had gotten to. I had been trying self-hypnosis and Epsom baths and everything before calling my doc's office who then told me to go to er......I hate the ER. lol

try 50mcg fentanyl patches,they work for me,however they are 80 times more potent than morphine,and pregablin,good luck

Hi,
Just wanted to tell you that senna tablets help with the constipation. I take three of them a day and it usually keeps me going pretty good. I have to take opiates daily also. You gotta do what you have to do.
Hope this new combo of meds works out for you. Good luck.
Much love,
Brain

By the way, I take MS Contin 30mg twice daily. They are long acting (twelve hours). I have found relief with these. But have been on them since 2009 and am finding I may have to add a short acting pain med at times due to seizure pain and migraine headaches.
Brain

Not to hijack your thread, Songbird, but I was just wondering, Brain, if the senna tablets have any side effects. I'm taking a couple of things that are causing "problems".
Thanks!

They stop working effectively with prolonged use IMO. 1-2 apples per day can provide significant help.

Personally im on a fent patch 50mcg and 20mg oxycodone 4x a day and valium 10mg 4x a day and soma 4x a day. And that combo just holds me over a tiny bit. So i need my meds upped. But I dont just have RSD i also had 2 botched surgerys befor it, so i deal with alot more then "just" the RSD pain. So between the 2 conditions the pain can get pretty horrific.

I am sure your conditions are genuine and that may be a wonderful cocktail, most would love that array. But combinations of medications like that are what take lives. Tolerance to medication has nothing to do with multiple cns depressors taken at a time. That stuff can stop your breathing when you sleep.
I really never ever speak on others med use, but for a doctor to prescribe all that in conjunction, makes me sad.

I agree, after having RSD. TOS. etc. since '83, Methadone, periodically (3x) 20 x 10/ X10 day (60 Pr day) I"m NOT a doctor! then diazepam up to 20x per day, then 60mg of Cymbalta/day, (Later) and whatever else your doctor needs is necessary! REMEMBER. I AM NOT A DOCTOR!!!! Take their advice, over and above, my own!!!!!!!!

Pete

ASB

When I'm late taking my neurontin the sharp pain becomes unbearable. I think docs say you're supposed to take it every 8 hours, but that's not often enough for me. I take it every 5 or 6 hours and that heads off some of the pain. So neurontin--the good old stand-by works best for me and lots of people in forum say same thing. Some like lyrica better but, like you, this med makes me sick.

Other things that work for me: Fentanyl patch, MSIR (quick acting morphine), and, definitely Biofeedback and deepbreathing exercises.

I've also learned that each med hits a different type of pain.

Yeah I had 2 botched TOS surgeries. So my coctail of meds is what I need. I didnt start out on all of them at once and obvisly we tried other solutions for a long time. So when you have your ribs and neck muscles taken out of your neck and chest, let me know how you feel! Pete here below knows what TOS already feels like, but to then have RSD added into the mix. Well its a wicked combo that I wouldnt wish on anyone! We have aways been careful with my meds and this dr doesnt even usally prescribe the combo i have, but she knows what TOS is and then how bad off i was after the surgerys and then the RSD. So we have balanced my meds very carefully over the years to get to where i can atleast function. I think Pete below understands what im talking about. You can even go to the board below for the TOS paitents and i honestly cant go on it because it makes me sick when i see "im having surgery" because it ruins your life and they dont know it. I wish i would have done my research to see how bad the surgery was. But I didnt, i wanted to be a normal teen and get back to work asap because I was planning on being a PT. But a few days after surgery and you relise your worst off then you were befor well thats when you know youve just been screwed over. When your ribs clamp down like a vise grip so it makes it hard to breath, or your one arm isnt even much of a use anymore, or when it feels like a knife is going in and out of your chest over and over or when your neck hurts and its stuck tilted to the side because one to many muscles were taken out, or when your scapula hurts and again feels like a knife is just going up and down over and over because you have a palsy and it no longer holds on its own or when under your armpit hurts and its a deep boring pain, most likely because to much muscle was cut threw and nothing was repaird after. Oh and all this was just a trial, so more could have been done and I wouldnt have known it. Add the bilateral RSD to it and its just grand! And when every DR you see tells you im sorry to much damage has been done theres nothing more we can do, its great! So while most would just LOVE this combo because how wonderful it is, I DONT! I would much rather have my life back. I do my research now, im very careful and again we did not start all this at one time, its been very slow over the past 6yrs to get everything just right for my body and my needs. So thank you for trying to understand!

Oh no tying here, I do understand. And I figure if a doctor feels it necassary, it probably is. And if I were in your situation, going peacefully in my sleep may be a blessing. And you will probably do fine on what you're on.
My grandma had MS for 20 yrs. Made peace with the fact it would be what kills her. Suddenly she finds out cancer has been eating her alive for some time. Suddenly she finds out MS won't be the death of her after all. Went through surgeries, therapys, could have squeezed 5 or so years out. But she took her daily ration of her oxy, soma and klonipin. She never woke up.
I am sorry for my bias, I know these meds help. I take them. But certain mixtures, I just can't help putting my $.02
Best of luck&i mean it.

Your situation is extraordinary even for an RSD patient and is not comparable to the OP. All our situations are unique though, that's why a doc needs to carefully choose our meds. Your tolerance and need are different than mine. What you need to take to get through the morning, could kill me.

I've been on the same meds and dosages for years, but when I was still trying out new combos, I had docs that made conversion errors and simply made errors on the directions. I had a pharmacist that was very good, caught them, and refused to fill as directed. (Not the norm in my experience.) He refused to fill one customers meds as prescribed and instead of going back to his doc, the young man found another pharmacist. A few months later, one of the clerks read an article about him in our local paper, that he had died from those same meds.

I understand what your saying completly, and people need to be cautios obvisly. These meds are HEAVY meds, meds that you dont take lightly and meds that shouldnt just be taken because your doc hands you them, and not everybody should take them or be on a combo like mine. I know having 2 muscle relaxants at large doses of course is always a risk, the 1 alone is a risk (soma) for anyone. The valium is also for my seizures, its complicated because taking opiots have a risk for seizures, i already have epilepsy, so then i have to take these heavy narcotics that add more risk to having seizures, but then i have an increasingly higher risk of having seizures when my pain isnt controled. So it really is a very fine balance and a hard one. I was a PT tech, so i knew about all the PM stuff befor my crap even happend. I would never recomend starting out on heavier narcs when just dxed. And I would never recomend a combo im on unless absoutly nessisary and then be sure you have all your drs watching all your meds. The combo im on was my last resort rout unfortantly, i had to go this path much earlier then I thought, but given my situation, not only is the rsd getting worse, so are my complications from the surgeries I had. So thats why ive landed where im at, and until I can get in to see Dr S. in philly in 2yrs to hopefully have some diffrent options, then im stuck where im at. And even then hes an RSD doc, he cant help the prevois damage thats already done and still going.

And im very sorry about your grandmother

Currently I am taking
Tegretol 200mg 2x a day
Cymbalta 120 mg 1x
Norflex 100 mg 2x ( during day)
Flexeril 20 mg 1x (at bed time)
Lortab 10/500 mg 1-2 pills every 4-6 hrs

As far as "pain relievers". I started with regular strength Vicodin when I originally had my nerve entrapment that started all this ( prior to my surgeries or RSD). Then I went to Vicodin ES. I have been on the Lortab on and off for a few years and on it daily for basically 1 1/2 yrs. I'm trying to work with my PMD to change that around as I am taking so much daily I'm concerned about my liver. This is becoming an uphill battle.

I've tried Tylenol 3 and Percocet 5/325. Neither were helpful so it was back to the Lortab.

I've taken
Lyrica- horrible weight gain
Dibenzyline-worked great for night sweats and shocking pain

fbodgrl,

It would be a simple switch for your doctor to order Hydrocodone/Acetaminophen 10/325 mg to cut down on the Tylenol content abit. It is sold under the brand name Norco 10/325mg. That would mean you could use up to 12 pills a day of the Norco 10/325 mg without going over the critical 4000 mg limit of acetaminophen in one day. That doesn't mean I still wouldn't be concerned about the ongoing "highish" amount of acetaminophen, but at least you would't be hitting the maximum recommended dose.

When I was at that stage, when occassionally I would need to take 2 tabs in the same 4-6 hour period, that my neuro added some MS contin ER to the mix. I don't know how your doc would react to the request for "more" meds or "increased doses. An important thing to remember when switching to a longer acting med is that one will probably still need some of the shorter acting med to use for breakthrough pain.

A sample of an "ideal" plan for someone currently taking Lortab 10/500 mg every 4 hours (6 times a day) consistently would be switching to MS Contin ER 30 mg twice a day. The total of hydrocodone 10mg 6 x day = 60 mg, so the MS Contin 30 mg twice a day is an equivalent dose. For many, the MS Contin ER doesn't last the full 12 hours that it does for others. In those cases, MS Contin 20 mg 3 x day would allow coverage every 8 hours and still total the 60 mg a day. I would still want to have 1 or 2 Lortab available per day for breakthrough pain. These "numbers" are also for someone with reasonable control of their pain who always uses at least 60 mg of Lrtab per day. If you consistently use 9 Lortab a day to account for the times when you take 2 at a time, that would be 90 mg per day, so an equivalent order on MS Contin ER would be 30 mg 3 x day. This is just a mini lesson on narcotic equivalent dosing and obviously not any comment on what your doctor would find to be a good treatment course.

Just to add, if a decision was made to go with Oxycontin ER, that dosing would be a little less, usually figure 2/3 of the equivalent narcotic dose. Some docs are more hesitant to order OxyContin ER just because it's more famous for being a drug of choice for people who abuse drugs.....and what the thugs try to steal from pharmacies. I don't get it myself.....an OxyContin ER 20 mg pill crushed wouldn't get an abuser any higher than a MS COntin 30 mg pill, but maybe druggies aren't smart enough to figure that out.

I don't know how comfortable you would be or your doctor would be with having that discussion regarding the switch to longer acting meds to cut down on your acetaminophen intake. At least suggeting the switch to Norco isn't "asking" for "more" meds or "stronger" meds. If it helps you feel more confident in the discussion, realize that asking for a switch to the longer acting meds doesn't actually involve taking MORE narcotic per day, just a different type. Good luck with trying to find reasonable pain control.

Well, I've just learned something.....so thanks for your post !

I didn't know that about dibenzyline.

Why aren't you still on the dibenzyline ? The occassional day sweats and overwhelming night sweats (yes, I'm a woman of a "certain" age, but, no, I am not menopausal) are a drag.

I have high blood pressure, currently well controlled with a beta blocker, but if I could get that EXTRA benefit from switching to an alpha blocker, that would be cool.

*****very personal, don't read if you are easily offended/grossed out*****
Did you notice issues with the possible side effect of trouble with having orgasms ? I have no, um, "social" life right now, but I do have this fantasy life about finding love again post divorce. Not having night sweats would be a plus, but that might be a tough trade off....

Finz,

I just wanted to chime in that when I tried the switch from Kadian, now available as generic MSER, to a comparable (ie reduced mg) of Oxy ER, I absolutely felt more intoxicated, which I hated. Perhaps that would have gone away had I stuck with it, but I was satisfied enough with the (then) Kadian, that I discontinued the test after just a few days. I was unable to drive at all when taking the Oxy. But, this is again an example of how we all react differently to different meds. Those little tweaks of chemistry can be a big deal.

I took it for around 4 months. It us very expensive ( about $800 for a 30 day supply). My insurance did cover it though. It is listed on the drug info that it can cause cancer or raise risk. So I went off it. My night sweats are minimal now. Before I started taking it I woke up basically every night soaked in sweat and having to change my clothes, etc. My shocking pains are view now as well... strange. I'm not sure if the dibenzyline" fixed" those issues or if the RSD just decided to stop those things for the time being. I know there are a couple other blood pressure type medications along the same lines as the dibenzyline that are suggested, but I am not sure on the names. They also just had come out with a generic when I had stopped taking it, but the pharmacy wasn't able to get it yet.

As far as the other question I have no umm social life to speak of so it is difficult to give an answer on that ;)

Hi, this is my first proper post so be gentle lol :winky:

I've just had my first ever positive pain doc appt. I've had CRPS for nearly 2 years, and hv tried a few different meds.

Amitriptyline gave me horrible dry mouth and tiredness. Seemed to help at first, but only for a couple of months before becoming useless.
Lyrica (pregabelin) seemed ok for a few months (apart from the weight gain) but then I had awful electric shock pains throughout my body on several occasions and doc took me off asap.
Gabapentin seemed ok for a bit but I started having bad abdominal pains and gastro probs, settled then came back again. I've cut my dose by half and am on way to cutting them entirely - halving dose has not affected pain or symptoms so I figure they are doing nowt for me... Pain doc agrees and is keen for me to get off it.
I wonder about all these horrible drugs we have to put in our poor bodies...all those side effects do their own damage. But pain is the biggest enemy so you do what you have to.

I have finally been given lidocaine patches, but warned not to use unless I have to as they are very expensive and docs don't like prescribing them for frequent use. Good old nhs lol. I haven't used one yet, I'm not sure about putting it on if skin is very red/hot/sore. Hoping that is kind of the point!

I started CRPS in my knee after an arthroscopy. It's now in my whole left leg and foot, and has started up in my left arm over the past few months. My back and face on the left side are also super sensitive and painful at times. Maybe I am looking at bilateral CRPS?

Good luck to everyone and thanks for all the info, really helpful :)

Bram

I wonder why doctors don't use them for frequent use? If its $, it is sure not their business. My doctor gives me a patch a day plus ointment. I have that stuff coming out my ears, and there is no warnings saying frequent use is dangerous.

My doc tells me to place the patch, not on the affected area, but along the nerve path that leads to the affected area. Study where major nerves run along your body. Try to get on top of this as much as you can, education is everything.

I don't know about where you're at, but here, the ointment costs less than the patches.

Hi Bramble,
Welcome to NT! I have been out but have used the Lidoderm patches 5% dose. I hope hey work well, but I would be careful and talk to your doctor about putting the patches on super sensitive parts of your CRPS/RSD. The only side effect I have noticed, and I don't think it happens to everyone, is that if I have a few days where I need to use one in the same spot, the skin will burn and be red where the patch was. You might not have that reaction at all but I would be wary of placing it in the same spot. As far as effectiveness it can be WONDERFUL if I can get it on at the very beginning signs of a flare up! It usually can stop it in tits tracks, as far as increased pain goes. Sometimes the CRPS has a mind of its own and just does what it wants anyways!!lol I will say they can work very very well though. I would watch for any skin reactions after you use them and keep a log to make sure you remember where you put it and how well it worked for relief. My physiatrist had me chart where I put it and the relief or lack of that I got. I noticed I can place it on a nerve grouping ABOVE the worst parts of my arm and it "trickles" down the nerves still, so I can avoid puting the patches over the more sensitive parts of my arm. It will (for me) cause the redness and burning still, so I try to avoid placing it directly over my hypersensitive areas! :)

I hope this helps a little and wish you luck!

Thanks for that, I like a bit of studying lol, I've got quite knowledgeable about my knee and the CRPS :winky: I'll ask about the ointment too.

Bram.

Thanks :) My doc never mentioned this kind of placement detail, lol, just shows how much a little outside info really REALLY helps.

Bram.

Hi Bram,

Welcome to the club (that I wish none of us belonged to ;) ) !!!!

You can definitely get some tricks and tools here that docs don't even know about yet.

I think the impression that you have (from your doc) that the lidodern patches should be used sparingly is off. If regular use can decrease pain, keep you more mobile, and/or let you use less narcotic/as need meds.....use them ! Like using other pain meds regularly to keep some level of control of the pain instead of chasing after a pain flare, the patches can help you stay on top of the pain rather than being overwhelmed by it.

Unless you are limited by the expense of the patches, get going trying them ! Remember that they should be used 12 hours on/12 hours off. You can cut one up int smaller patches to 'stretch' further along that dermatone, while still only using "1" patch, if that is your recommended dose.

I've seen patients use lidoderm patches directly on the reddened/thin skin affected by their RSD with good effects. Never use it on broken/nonintact skin. With a few good recommendations in this thread alone about the effectiveness of applying the patches further up towards the nerve root, I'd sure try that.

When I used the patches, I applied directly on the painful burning area with only mild relief. I have RSD from TOS and have pain to the left of T1 - T2. I have strange discolorations down my arms (? just Raynaud's vs leviticus reticularis), but I don't have that "typical" thin red skin with profound allodynia that so many RSD'ers suffer from.

Yeah the patches can definitely be put on the area. But if anybody has ever had to peel one of those off early and your skin gets pulled up, damn. Painful.
I also cut mine up in 4s. They're large here.

Good advise.

Thx fins and Morgan, this is all really useful stuff. I'm going to give the patches a go and see how I get on....it's annoying that my doc gave me them as something to go to on occasions when I couldn't cope with the pain level. Sound like they just don't work like that lol. Darn docs :rolleyes:

Bram.

Actually they can be for when the pain flares up. When I have them. lol, I generally only use them when my normal medications aren't doing the job. But I know that some people use them almost daily as well. I think it depends on the person and the treatment plan their doctor has set up for them.

Thanks for this, I spoke to my physio today who said that GPs aren't keen on them being used daily for pain relief :confused: because pills are so much cheaper...so if I can keep them for when pain is bad, at least I have something that might work. I've not tried one yet - I'm kind of scared in case they really do work on the pain, and then I'll just want to use them all the time....which means it'll be time for another fight with the nhs. Sigh.

Thanks Songbird :)

Bram.

I find that they work MOST effectively by only wearing them in the same are a few days a week. But if you have multiple areas or develop them, than it's a non-issue. If you're going out of pocket, that's one thing, but otherwise the most appropriate med should be used. Docs often prescribe meds that have bad side effects, so that can run your expense of care up as well. Pennywise and pound foolish...

its is ****
 

:confused So sorry sometimes these things just don't work you are not alone in this we have all tried many things some with a little success and some with nothing never give up they may be something that will work a little I have A SPS fitted its 3 years old now and its not really doing a lot and pain is back to how it was. It gave some relief but not as effective as I hoped you could ask about this but think carefully about it Good Luck